Friday, January 9, 2015

I have worked as a hospice social worker, administrator, and researcher for 35 years. I now find myself a hospice caregiver for my husband who has Stage IV cancer. Despite my professional experience, I have had to learn many things about being a caregiver. Perhaps one of my most important lessons has been the unexpected experience of feeling “crazy”. I find my day-to-day reality is often in contrast to others around me, leading me to question my sanity. This is a new and unfamiliar distress not found in caregiving literature. It is however, not unique as I have heard these feelings and frustrations expressed many times by other caregivers in my support group encounters.

It is the stark contrast between my daily experience as my husband’s caregiver and the well-meaning comments of numerous friends and medical professionals that gives me pause, causes me to question myself, and leads to a “crazy” feeling. I live the reality every day of watching my husband, the man I have known and loved for two decades, change before my eyes. The marathon runner I know is now unable walk more than 50 feet, uses oxygen to breathe, grimaces while swallowing, and awakens with pain in his head. Yet, those who we encounter will say, “You look good”. This is especially distressful when the person saying it is a health care professional. Those three words tell me that I must be imagining or dramatizing the situation, that in fact I am crazy. As I worry and question the physical decline of the man I love, I hear the doctor summarize our visit saying, “I think you are doing great”, and I again ask myself, “am I crazy?”

A healthcare professional encounters a patient for perhaps an hour each week or every few weeks. I see my husband 24 hours a day, 7 days a week. Yet, during most conversations about his illness, I am not asked about my observations, I am not asked about my thoughts or feelings, he is the center of the experience. However, unacknowledged in this patient only centered approach, is the fact that there are challenges with my husband’s reports. For instance, there are times he doesn’t remember something. Most problematic with his reporting is his tendency to minimize his symptoms. Like many patients, he doesn’t want to complain, to be a bother, and he doesn’t want to appear to be a “bad patient”. In that office encounter, I hear him respond to questions by saying, “everything is fine, I’m doing ok”, again I feel crazy. Despite being able to fake it for a short encounter with a nurse or doctor he can’t fake it for the family. Like me, despite his impression management our children see the grimaces, notice the increased sleep and fatigue, and tell me they see changes between their visits. So maybe I’m not crazy? One helpful solution would be for the physicians and nurses to engage me in the visit, encourage my input, and encourage me to share my experiences and observations. But this is only part of the formula, for without making me feel heard, I will still silently imagine I am crazy.
How can healthcare professionals circumvent family feelings of “craziness”? Dr. Marsha Linehan, creator of dialectical behavior therapy (DBT), contends that to help someone experiencing psychological distress it is important to first validate the person’s experience and communicate an understanding of the person’s perspective. The idea is to listen and recognize the distress and then acknowledge the right to “feel” that distress, thus normalizing the feelings.

Dr Linehan identifies 6 levels of validation that can be used to improve the helping relationship. In summary, by first communicating that one is listening and understands, then problem solving, closeness, trust, and support become possible. Validating does not necessarily mean agreement. It is simply acknowledging a person’s emotions, thoughts and behaviors, respecting that those emotions have causes and communicating they are understandable. It is a very powerful tool in the building and maintaining of a helping relationship. I believe that if the members of our health care team used more validation, caregivers would experience significantly fewer moments of feeling “crazy.” The levels of validation identified by Dr. Linehan and described below take only a minute to use in conversation but can make a big impact.

Level 1: Pay Attention.This is done by giving the individual undivided attention, looking interested, listening, staying focused and responding with appropriate facial expressions. For example, the nurse who leans forward to hear me speak, grimaces when I share something painful and nods occasionally as I speak. At its most basic level my feelings are recognized and acknowledged, I know that I was heard, even if a word is not spoken.

Level 2: Reflect Back. In this case the provider reflects the thoughts and feelings they heard to insure understanding of what was said, without any judgment in tone or language. The doctor for example repeats what is heard, rather restating the words. “I hear you telling me that you feel very anxious that your husband is not getting better.” I know I was heard and the doctor helped me by reflecting it back, giving me a label for the feeling.

Level 3: ”Read Minds”. This level involves looking just under the surface at what is not said. For example, at the end of a long visit where I’ve voiced several concerns, the nurse might say, “You are feeling more and more anxious as the symptoms increase.”

Level 4: Understand. The fourth level of validation puts the person in context with their individual past experiences. In my particular case, the doctor might say, “I understand given your years in hospice why you are concerned with your husbands weight loss, that is understandable.” With this unique context, I feel understood, get a sense of why I feel anxious, and have permission for my feelings, thus I am not “crazy”.

Level 5: Recognizing the valid. In this level, the provider acknowledges that most people would have the same thoughts or feelings given the current reality and facts. Knowing that other people feel the same way not only means my feelings are understood, but also my feelings are not unexpected or out of the ordinary. In this case the nurse might say, “Its very normal for you to get anxious when you see him so uncomfortable.”

Level 6: Show Equality. The final level of validation involves treating the person as a real person rather than a person with a specific problem who is unable to resolve it. The simplest example of this would be the doctor who turns to me after my husband tells them about his week and asks, “What have you noticed?” I feel not only listened to, but believe my opinion is of value and, I am viewed as a member of the “team.” I do not feel crazy.

I urge hospice and palliative care team members to find as many ways as possible to validate the feelings of caregivers. Listen for the feelings behind the words, openly recognize the feelings, give them reassurance they are normal, and give them confidence they will be ok.

Pallimed: A Hospice & Palliative Medicine Blog Founded June 8, 2005.
This blog is a labor of love whose only mission is educational. Its content is strictly the work of its authors and has no affiliation with or support from any organization or institution, including the authors' employers. All opinions expressed on this blog are solely those of its authors.
In addition, all opinions expressed on this blog are probably wrong, and should never be taken as medical advice in any form.